Amanda Filippone’s Story

The New Jersey City University women’s soccer team was in the midst of a ball possession drill some 30 minutes before its Sept. 21 game against conference rival William Paterson when Amanda Filippone trotted to the trainer’s table, hoping to loosen her stiff back.

A junior midfielder at the Jersey City school, Filippone hopped up on the table and crossed her right leg over her left, contorting her body to stretch her back — a routine exercise that can surely be spotted during any team’s pregame warm-up.

Filippone says the stretch had nothing to do with what immediately followed — an epileptic seizure that landed her in the back of an ambulance bound for Jersey City Medical Center.

Hours later she was released from the hospital, but Filippone would miss the remainder of the Gothic Knights’ 2013 season with what she estimates was the 10th grand mal seizure of her life.

The pregame episode illustrates the unpredictable and erratic nature of epilepsy, a neurological disorder that affects more than 2 million Americans and 65 million people worldwide, according to the Epilepsy Foundation of America.

Filippone was diagnosed with the condition at 7 years old, still not old enough to fully grasp the gravity of the news. Since then, the seizures have come at random — at the dinner table, in the classroom, in front of the computer screen. Once, she fell down a set a stairs during a seizure.

Muscle contractions. Foaming from the mouth. Loss of consciousness. Sometimes it’s all over within 30 seconds. Other times, she says, the seizures can last upwards of four minutes.

“It’s scary. You know you’re in one place, and then next thing you know you’re waking up in an ambulance,” Filippone said last week as Epilepsy Awareness Month wound to a close.

There’s both physical and emotional aftermath — the extreme fatigue, the anger, the confusion, the shroud of fear that lingers among those closest to her.

“It’s a very, very scary thing to watch. You don’t know if they’re going to stop breathing, you don’t know if they’re going to come out of it,” said Filippone’s mother, Colleen. “It’s horrible. It’s heartbreaking just to watch her go through it.”

Yet, Filippone’s condition hasn’t hijacked her life. She has limitations: she isn’t allowed to drive a car or drink alcohol, and must limit her consumption of caffeine, which can trigger a seizure. With a strict regimen of medications, Filippone manages her day-to-day life. The affable 20-year-old says her beloved sport has helped her come to terms with her condition and find normalcy.

“Soccer’s been huge for me. I’ve never thought about restrictions once I stepped on the field,” Filippone said. “I kind of just felt as if everyone else, as if nothing is wrong with me, no medical issues. I just felt like I was one of them.”

The game sets her free.

• • • • •

Brittany Hoffman was going through her standard pregame routine when she noticed her teammates’ warm-up come to an abrupt halt.

Hoffman, the team’s junior goalkeeper, is well-informed about Filippone’s condition, having worked as an emergency medical technician for the past 2 ½ years. After all, she helped organize Filippone’s annual players-only meeting during the preseason when Amanda explained her disorder to her new teammates.

“I just remember knowing instantly what had happened and running over there,” Hoffman recalled. “It’s not something for everyone to see, and definitely everyone was shaken up.

“There’s not much you can do,” Hoffman added. “You have to make sure she doesn’t hit her head and wait for her to come out of it.”

After the September incident — her first and only on-field seizure in her three seasons at Division III NJCU — doctors told Filippone that she would have to cease all physical activity for two to four weeks while her medication levels were analyzed. When those results indicated abnormally low levels, Filippone decided to scrap the remainder of the 2013 season, opting for a medical red shirt that would give her an additional year of eligibility at NJCU.

However logical the decision was, she soon found herself coping with the reality of yet another lost season after an ankle injury limited her sophomore campaign in 2012 to just 10 games. Without Filippone, who is heralded for her two-way abilities and communication skills, the Gothic Knights stumbled to a 1-11-1 record this fall and were further hamstrung by low roster numbers.

Filippone, a team co-captain, could do nothing but watch helplessly from the sideline.

Yet, that’s exactly what she did. Instead of withdrawing herself from the team, she made it a point to stay around the game, attending practices and every game — both home and away.

“It did her a little good, being able to help out, but deep down I know she was crushed not being able to play,” said Colleen Filippone.

“Around me, I could tell she was frustrated,” added first-year NJCU coach Mike Vivino. “You could tell she was frustrated and upset that she couldn’t play, it was bothering her. But when the other girls were around, it was always a positive attitude.”

That positivity was rewarded in mid-November, when doctors cleared her to resume physical activity. Filippone has already begun training for the 2014 season.

• • • • •

Filippone’s mother recalls the first seizure coming on the seat of a bicycle. Then just 7 years old, Filippone was on a bike ride with her older brother Chis and father John, when she dazed off, suddenly veering out of the street and into a bush.

A series of minor seizures ensued within four months of that first episode, leading to a sleep deprived electroencephalogram (EEG) test that induced her first full-on grand mal seizure — also known as tonic-clonic seizure. According to the Epilepsy Foundation of American, grand mal seizures are the most common type of generalized seizures, and can result in convulsions, stoppages in breathing and serious injury.

However, Filippone also suffers from the far more common “complex partial” seizures, involving momentary lapses in concentration and focus, several times a day.

Since her diagnosis, she has worked closely with her doctors to find the right combination of medicines to subdue her outbreaks. At one point, she was taking 12 pills providing 4,000 milligrams of medication daily. Her current daily regimen consists of 10 pills, but her total dosage is down to around 3,000 milligrams per day.

She’s never missed a dose. Ever.

Then again, control is a relative term for Filippone, as the threat of her next seizure always looms.

“I’m not sure what can trigger it — at this point it could be anything,” Filippone said. “I worry about my friends that are around me, I don’t want to scare them. I’ve had (seizures) in front of friends before where they kind of do get scared, take a step back and don’t know what to do.”

But the seizures hit hardest at home in Kenilworth, Filippone said, where her family shares the emotional burden.

“It’s just as scary for them to witness it other than having it. My little sister (Alyssa) has only witnessed one or two grand mal seizures, but one was when I was eating at the dinner table right by her. She’s still scared to this day.”

• • • • •

A sociology major, Filippone plans to pursue a career as a school guidance counselor upon graduation. Having lived with epilepsy for nearly 14 years, she speaks of it with poise and grace and a maturity well beyond her years. She hopes to spread awareness of the disorder in both her professional and personal life.

However, that process had to begin from within.

When she arrived in Jersey City in 2011, the 18-year-old Filippone was hesitant to broach the subject with her new teammates and relied on the team’s coaching staff to inform members of the program.

“She wasn’t as open about her condition,” Hoffman recalled. “I think that was mainly because she didn’t know anyone.”

Much has changed since then.

For each of the past two seasons, she has taken it upon herself to explain her condition to the team — a simple gesture that further empowers Filippone.

“I don’t want to send a text message and say, ‘I have this,’ or let the coach do it — I want to do it from my standpoint so they know,” Filippone said.

“I feel like soccer has kind of opened me up more as a person to kind of spread the word. My first year, my coach told the team. As the season went by and the year went by, I kind of came to peace with it. I knew I had to kind of open up.”

• • • • •

As Filippone eyes a comeback in 2014, she says her doctor maintains that soccer doesn’t put her at additional risk, although she is urged to avoid heading the ball.

But two-plus months after the “most emotional” seizure of her life, Filippone knows her place on a soccer field will never be guaranteed.

“Once I step on the field I play every game like it’s my last. I never know when I’m going to get a phone call, an email or the next doctor’s visit to tell me that I can’t play.”

Filippone says a light at the end of the tunnel exists for some patients with epilepsy. Whether she will live seizure-free at some point remains to be seen. For now, it’s about reclaiming soccer as the centerpiece of her identity.

“It’s the love of her life,” Colleen Filippone says. “It’s the flame that keeps her going.”
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I have been battling Epilepsy for over 13 years and still am. Over this past year, I have been reached out to from all over the world. Texas, PA, NJ, NY, Michigan, South Africa, etc. The reason why I have is because of all the interviews and stories that have come out. I have been on the internet, newspaper, the jersey journal, phone interviews, and hopefully in a magazine n local tv channel soon! Below are the links to my story and would gladly appreciate your help by sharing it and spreading the word!

If anyone is interested in reading my stories or wants to talk please feel free to comment or message me!